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Scleroderma Foundation
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eLetter #763 | May 18, 2018  
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Kids & Teens Program at National Conference

The Kids & Teens program at the National Patient Education Conference is an exceptional experience for youth ages 6 to 17, who have scleroderma, or have a parent with scleroderma.  Siblings and parents or caregivers benefit, too.  The weekend is filled with fun learning and activities specific to their needs. 

In the words of Sandra Mintz, M.S.N., R.N.-B.C. of Children's Hospital Los Angeles, an originator of the Kids & Teens Program, "I want them to know they have a bright future...don't let your whole life be about the disease." 

Early Bird Registration closes 5/30/18.
Have you registered yet?  
scleroderma.org/conference.

livebetter with pulmonary rehab
 

What is Pulmonary Rehab?

Pulmonary Rehabilitation (PR) is a program of educational classes and supervised exercise sessions for people with chronic breathing difficulty. PR can benefit people diagnosed with COPD, pulmonary hypertension, interstitial lung disease, and other chronic pulmonary disorders.

Live Better with Pulmonary Rehabilitation is a pilot project of the American Thoracic Society (ATS) and the Gawlicki Family Foundation to increase public awareness of pulmonary rehabilitation.  Live Better's mission is to inform and educate individuals with chronic lung disease about the potential benefits to them of pulmonary rehabilitation.

learn more

Join Inspire!
 

"What 'Helper' Items/Tools Do You Use?"

Using a cane or walker, or oxygen or other "helper" tools can challenge us in many ways.  Sometimes we have emotional barriers to accepting the help we need.  If you have concerns about using an assistive device, or if you have advice to offer others, join the discussion thread in the Scleroderma Foundation's online support group at Inspire.com.  It's a good place to go to talk to someone who understands. 

join the scleroderma online community

Deborah Winter PhD
 

New Research Award

Thank you to the Greater Chicago Chapter for providing additional funding that made it possible for the Scleroderma Foundation to award an eighth research grant this spring.

The award was presented to Deborah R. Winter, Ph.D., Assistant Professor, Medicine-Rheumatology, Feinberg School of Medicine, Northwestern University, for her project entitled: Tracking the fibrotic signature of systemic sclerosis at the cellular level

learn about the research grant program

Stepping Out Logo 2018 Be Part of the Cure
 

Stepping Out with a Team

Being part of a team that walks or runs in a Stepping Out to Cure Scleroderma event is a great way to experience the rewarding feeling that comes from doing good for others.  Bringing together coworkers can have added benefit in the workplace.  Teams can come up with fun ideas for fundraising events to boost team donations, like bean bag toss or bowling night.  Doing something fun together outside of the office builds trust and team spirit that translates to better performance in the office.  And the company gains valuable recognition for being a good civic partner.  

be part of the cure, form a team today!

Oklahoma Chapter Logo JPG  

Support Groups of Oklahoma

Support groups enable individuals with scleroderma to connect and exchange information with others who face similar problems. Groups also host expert speakers from time to time. There are many Scleroderma Foundation-affiliated support groups around the country, although some geographic areas are less well represented. Each week, we highlight support groups associated with a particular chapter. The Oklahoma Chapter hosts two support groups.

Oklahoma support groups

Hard Word 2017 Add Your Voice  

June is Scleroderma Awareness Month

The Scleroderma Foundation will again partner with the Scleroderma Research Foundation and Scleroderma Canada for our Hard Word, Harder Disease awareness campaign during the month of June.  A "tool kit" will be available for you to share messages on Facebook and Twitter and other social media platforms. 

www.sclerodermaaware.org

STUDY PARTICIPATION OPPORTUNITY
Fatigue Trial U Mexico
 

Seeking Young Adults with an Autoimmune Rheumatic Condition for Research Study on Fatigue

Researchers from the University of New Mexico (UNM) are seeking participants for a study on how fatigue affects life in young adults with autoimmune rheumatic conditions, such as rheumatoid arthritis, lupus, scleroderma, psoriatic arthritis, and ankylosing spondylitis. To be included, participants must be between 18-30 years old, have fatigue, cannot be pregnant, and communicate in English. The study involves completing a packet of questionnaires about fatigue and daily life and participating in a phone interview.  This study was approved by the UNM Human Research Review Committee (Version 2 - HRPO#18-198). 

Contact Janet Poole Ph.D., O.T.R./L., jpoole@salud.unm.edu, (505) 272-8276, or Kristine Carandang, O.T.R./L., carandangkm@gmail.com, (626) 722-8761

 
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Diamond
National Sponsor
Actelion JSN 2018

Platinum National Sponsor

Boehringer Ingelheim


Gold National Sponsor
Bayer Logo 2018 JPG


Corporate Sponsors
Genentech


 
 

 

   

Disclaimer: The Scleroderma Foundation in no way endorses any drugs, treatments, clinical trials, or studies reported in the eLetter. Information is provided to keep the readers informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation and treatment.

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